All Day Kindergarten and Therapy!

I can't avoid it any longer....  My daughter is going to Kindergarten next year!  I have to say we are both ready!  Although the day will be a little taxing on her physically she definitely is ready for the mental stimulation.  I was telling my husband the other day that this winter has broken me! I no longer feel like a good mother.  I just can't occupy her any longer.   Although, I will be sad that she is getting older there will be no tears shed this fall when she steps onto that bus!

I should mention that I am sending her to kindergarten at the same place where she currently goes to pre-school.  She already knows the teacher and is very familiar with the surroundings.  I also am the chair-person for their fundraiser in the fall so I will be spending a lot of time there.  So.... I do not have a heart of ice just very spoiled next year : )

She will be going to school all day and she is ready!  I could not say that last year so I am very happy with my decision to hold her back.  I have no doubt that the first part of the year will be an adjustment and I often contemplate what activities if any I will enroll her in for the fall.  Keeping it together all day will be physically exhausting.  If we lived in the south and I could just let her run around outside for a half an hour that would work.  We don't.

If I have to pick one activity for her to do it would be swimming.  She loves it and it gives her muscles a great work out with hurting her joints.  I would pick this over PT, Gymnastics, Ballet, etc.  She belongs to the local YMCA.  The lessons are reasonable and she has a fantastic instructor!  The best part is at most she has 2 other kids in her class.  In-fact for the first 5 months of classes she was the only kid in the class.  Unfortunately the class is at 2pm and this instructor only teaches it on Thursdays.....

Is it worth taking her out of school early to get the benefits of the class?  There is another mother in the class before whose daughter also has hypotonia.  She actually gave me the idea to take her out.  She doesn't think her daughter will receive services next year and was having the same issue.  She felt it was worth taking her out early one day for the benefits of the class.  I talked to the director of the school about it and she was hesitant.  In the end it is kindergarten and taking her out won't be the end of the world.  Just another decision to contemplate.  I guess that is par for the course.  

Summer is Great Therapy for Hypotonia!

Summer is almost here and I wish we could bottle it up and keep it around for the winter!  Going to the park, water balloon fights, swimming, hopscotch, jumping rope, walking up and down hills, even walking on the curb are great activities to help kids with Hypotonia!

With that said, I realize that some of these activities may not even be possible for some kids.  But even the activities they can attempt have one thing that no amount of PT can give them.  FUN!  I think one of the biggest challenges my daughter faces is lack of interest!

She doesn't even always want to go to PT because it is hard work with little or no reward (to a 5 year old that is).  In the summer she is working her muscles without even thinking about it.  To her she is just having fun!

This weekend for example...
-We went to the farmers market.  We walked around for about 10 mins, had an ice cream break and then walked around for another 10 mins.   This helped her build her endurance.
-She helped my mother plant flowers.  She dug holes and watered the flowers.  Both great for shoulder strength.
-Had a balloon fight.  She was running around tossing balloons.  Great for her endurance and practicing running.  We had lots of breaks but she was out there for an hour and a half.

I will give a word of caution that I always need to remind myself.  Make sure your kids aren't over doing it.  Although my daughter didn't seem worn out during the water fight and wanted to continue, I pulled the plug a bit too late.  She was pretty sore at the end and is totally wiped out today.  She does this with swimming also.  Unfortunately, her muscles can't keep up with her mind but I have to know when to say when!  This isn't always easy when everyone is having fun!

Enjoy this summer and all the fun it brings!  Also, remember to watch your child's pace.  I know my always wants to keep up with other kids or is having too much fun to stop.  I have to be the gatekeeper which isn't always fun.  Either way it is more fun than sitting in a PT's office!

Busy in the Garden!

Stroller for 6 year old! Yikes!

Payback is a bitch.....I am buying my daughter yet another stroller and I am sure it is because of all of the judgmental looks and thoughts I gave a family in Babies R Us over 6 years ago.  I was shopping for my first stroller and a family came in with a 6 year old looking for a stroller.  Even the person helping them was like "for her???".  I thought are you kidding me?  She must be the most spoiled and lazy kid ever!  It never occurred to me that she might have a medical reason or they lived in the city and walked everywhere and she couldn't keep up.  I thought the worst.

With that said my daughter now 54 lbs has grown out of her stroller.   I took her to the park the other day and was worried the wheels on our current stroller were going to come off.  I have an Uppababy that I LOVE but is only rated for up to 50 lbs.  So I am stroller shopping and thought I would share my research.

When I first started writing this post I decided that I was not going to invest another $600 in a stroller and go with a relatively inexpensive Jogging stroller rated up to 75 lbs.  I wasn't totally convinced this was the best option so I decided to find out what other people in similar situations did.

Boy, did this put thing into perspective for me.  First off, I think I can say with certainty that my daughter will not need a wheelchair.  It also made me realize that when she is older she will not want to be in a stroller.  She will want to be more independent and want to do what her friends are doing.  Right now she is happy to ride but when she is with her older cousins she doesn't ride unless she needs to.  It made me think that when she is older and still has trouble walking she will probable want something that gives her more independence like a walker.

I also found out that insurance may pay for an adaptive stroller.  (Word of caution:  if you think your child might need a wheelchair at some point make sure you ask your insurance if they will pay for both not just one or the other.)  They base the decision on medical necessity and typically you have to buy the stroller through a medical equipment company that they use.

So, for now I am waiting on my insurance to decide if they are going to pay for an adaptive stroller.  I have no idea how long this takes or what we are going to do in the meantime.....  Right now we are avoiding going places where we need a stroller.  I might look into renting a stroller or borrowing one if I get in a jam.

I am including my picks for a regular stroller since I already did the research.  I am not including picks for an adaptive stroller because I don't know what my insurance is going to tell me.  There will be a follow up post!

Here is my original blog.....

When searching for a stroller for an older child you need to consider a few things.
First off is this for a special needs child.  There are Adaptive Strollers out there for a child with a physical disability but they are expensive.  I found a site that had a few jogging strollers between $700 - $900 but I have no idea of the quality.  Most other strollers/ wheelchairs  were well over $1,000.  They do go up to 100 lbs., 200 lbs., and more.  So depending on your child's disability it may be worth investing in a more expensive stroller that will grow with your child.  
http://www.1800wheelchair.com/asp/view-category-products.asp?category_id=519&filter_130=1202

Second, what are you going to use the stroller for?  Running/walking, rough terrain, shopping malls, city walking, amusement parks.  This is still an important consideration.  When my daughter was younger we lived in the city so we used the stroller for everything.  Now she is older and we don't live in the city our needs have changed.

Third, weight limit.  How long do you think you are going to use the stroller.  I am not sure there is a concrete answer for that as I never thought we would outgrow the Uppababy.

Lastly, cost.  If you want to spend a lot of money great!  The stroller world is your oyster, take your pick!  I however have already spend around $800 on strollers and am looking for the most cost effective option!  The prices definitely go up with the weight limit.

I am feeling hopeful that my daughter will only need the stroller for a few more years.  I have not yet resigned to buying an adaptive stroller.  Financially, maybe not the best decision but mental it is the only one I can handle right now.  So I have decided to look for a stroller that goes up to 75 lbs.  I need something that I can use when I am walking to the park/beach (when on vacation), moves easily in crowded areas like the city or an amusement park and folds easily and compactly.  In my opinion the Uppababy failed in the last two categories.  When we bought the stroller those things were not important to me but now they are.

These are some of the strollers I am considering.  There are lots of choices out there but these are the ones that I think give you the biggest bang for your money.

Top Pick - Joovy Zoom 360 Swivel Wheel

This retails for around $250 and has a maximum weight of 75 lbs.  It also has attachments for a kick stand for an older child.  It folds fairly easily and compact.  The back wheels come off to give you more room in your car.  It is wide so not as compact as I would like but found for the price and weight limit it can't be beat.

Close second - Baby Jogger City Mini.

Retails for around $240.  I say this is a close second because of the size and price but it has one major flaw the weight limit.  It only goes up to 65 lbs. If I had purchased this instead of my Uppababy I would be in good shape but I worry that my daughter will out grow this stroller too.  Unfortunately, children with mobility issues also have issues with weight.

Third, Baby Jogger Fit

Retails for around $299 but I did find it on sale for $279.  The major pro for this stroller is the weight capacity and ease of folding.  It goes up to 75 lbs. and is easy to fold.  The major con is the front tire.  It does not swivel which makes tight spaces like city walking and malls difficult.

My last pick is the Bob Revolution SE

Retails around $370.  The price of this stroller is a bit high and the capacity is only 70 lbs.  It is one of my picks because I know they are easy to maneuver and fold.  This stroller also has a swivel tire so easy to move in compact spaces.

How much should you push your hypotonic child? And Strawberry Shortcake Cake!

I haven't written in a while because I feel like I have nothing new to write and my daughter has been sick, of course...  I feel more like talking about the amazing Strawberry Shortcake Cake that I made last week than my daughter's hypotonia.  So I will start with the cake.  I got the recipe from Pioneer Woman's website.  http://thepioneerwoman.com/cooking/2009/05/strawberry-shortcakecake/

It was easy to make and tasted just like Strawberry Shortcake.  No it was not low in sugar or fat but I have a very bad sweet tooth and this satisfied it with one small piece.  I should also mention that I didn't have the correct size pan so I used an angel food pan with a hole in the center.  Worked perfectly and I was able to put whole strawberries in the center.  This recipe is a must for spring!  I think I will make it again today!

So back to Hypotonia.  I came across a website last week that talked about treating Hypotonia.  It had some great advice but one piece of advice was to push these kids to help build their stamina.  This always troubles me.  I always wonder how much to push my daughter.  I mean if I were to train for a race (I don't run so this is highly improvable) I would push myself every time I ran to build my speed or distance.  This seems logical to build endurance.  But is it logical for a child with Hypotonia?  I don't know.  I think part of the challenge is you are dealing with children.  If they would just tell you what hurts or what is on their mind in a logical way parents lives would be much easier.  The reality is they don't.

The other day my daughter said she did not want to go to ballet class.  She had fallen when she left school and said her knee hurt.  She was dancing around the living room so I was pretty sure this time this was not true.  She then said she didn't want to take ballet anymore.  Okay, this might be the real reason but  wondered if she was just tired.  I had just spent $150 on tickets and a costume for her recital so in 5 weeks she can throw the ballet slippers away but until then she is going to ballet (the class isn't all that physically challenging)!  My point is I can never tell if she is really tired and hurting or she has some other motivation for not wanting to do something.  Do I send her to ballet even though she might be tired?  Will this help her endurance or hurt her more.  I decided to send her to ballet and she had a good time but I really questioned my decision.  After the fact I think it was a good one.

Last month I had her evaluated by the school district again.... When the school district had finally wasted enough time and was under the gun to complete the evaluation it turned out to be on either side of a trip we had planned.  She had her educational piece just before the trip and the PT piece just after.  We went to a water park which was physically exhausting.  After the PT evaluation she was exhausted.  She was tired before this but it really set her over the edge.  She then of course got sick.  Sick for almost 4 weeks.  This round really set her back.  I found my daughter who was really coming out of her shell at school was being very quiet and reserved again.  It also took a big toll on her stamina.  To make matters worse she didn't qualify for services b/c our school district has impossible standards.  That is a topic for another post!

I think this last case was extreme and I didn't have a ton of choices but I do find when she is pushed too hard she gets worse not better.  Everything seems to fall apart. Finding that sweet spot is really tricky.  If anyone has some secrets I would love to hear them!

Increasing My Daughter's Energy Level - the Glycemic difference

I tend to write a lot about food because I think it is so important to our overall health.  I think it is especially important to kids with Hypotonia who tend to have tend to have low energy levels.  My daughter's energy levels have been very low over the past year and I have been trying to figure out why.  Even people who are familiar with Hypotonia and the symptoms comment on her low energy and stamina.  It always made me worry that something else was going on.....

I tried a gluten free diet after reading a blog and how it had helped a child with Hypotonia.  I didn't notice a difference in my daughter's muscles but noticed a big difference in her energy level and have been trying to figure out why.  Well, with the help of a friend I think I have cracked the case!
My friend suggested I try organic wheat.  She thought perhaps she was having a reaction to the pesticides.  So I switched to all organic wheat products.  I didn't notice a difference right away but I didn't expect too.  Then after she sent me an article about bread I started giving her sprouted bread and noticed a difference right away.

 http://foodbabe.com/2014/02/24/healthiest-bread-on-the-market/

I immediately investigated.  The packing on the bread said a low Glycemic Index.  Honestly, I thought this sounded like a fancy marketing word and was not taken in by it but decided to look it up.  What I found out amazed me.

Turns out not all carbs are created equal.  We process some carbs much faster than others.  The reason for this is there are two different types of starch.  Amylose and Amylopectin.  We convert Amylopectin starch to sugar much faster than Amylose starch.  If you have high blood sugar the Amylose starch is much better for you.

My husband has a family history of type II diabetes.  In fact when we were first married he had high blood sugar levels and was considered pre-diabetic.  Since then we have changed our diet and his blood sugar levels are on the low side of the normal range.  I think since my husband issue had been solved and we were so busy looking for other issues for my daughter I hadn't considered her blood sugar!   She eats pretty much what we eat so if my husband isn't having an issue with blood sugar why is she?

I don't know the answer to that.  I can only speculate that her inactivity is having an impact.  Since figuring this out I have reduced her carbs and gone back to the "High Amylose" carbs.  We are on day 2 and her energy level is great.  She gets up in the morning and wants to play.  She comes home from school and wants to go outside (it is finally warmer in the NE yay!). This is a stark contrast to before.  She would get up in the morning and plop in front of the tv.  She would get home from school and plop in front of the tv.  I thought this is just par for the course with Hypotonia but I was wrong.  She still tires from activity and this is normal but it is not like before.

Keeping up this diet I can see will be challenging since there are so many carbs for kids and there are just so many times I can get away with veggies and hummus for snack!  But now that I know the driving force behind the issue I will have too.  It will impact her overall health!

Support Options for Kids with Hypotonia

Hypotonia has caused my daughter to have flat feet.  We don't see an orthopedist because her gait is not that bad and seems to be improving with proper shoes and PT.  I was advised on shoes and even orthotics.  I was also told that building her calf muscle will improve her arch and I have to say it has worked.  She is still very flat footed but I see a huge improvement in her gait.  In case you are wondering she wears New Balance sneakers 99% of the time.  The rest of the time she will wear a Jumping Jake or Pediped dress shoe.  Oh, and you can't buy New Balance sneakers off the rack you really need to find a store to get a proper fit to support the arch.  Not all of their sneakers are created equal but when you find the right one it is great! www.newbalance.com

Since I had been advised on the feet it never occurred to me that their might be options to help support other issues (mainly sitting in a chair).  I figured if there were things out there someone would have told me.  Well, a friend who used to work in Early Intervention sent me a link to a website with such things. www.funandfunction.com
She had suggested a device that might help my daughter sit in a chair.  The item would have been a bit embarrassing in a school setting but wondered if it would helpful at home.  I asked her PT about it and she wasn't familiar with the items and didn't have any feedback.  That wasn't really helpful but did get me thinking.
My daughter is not the only child that has trouble sitting in a chair so there must be something that can support her at school.  I called her old PT and she suggested a wedge.  She said it helps keep their feet on the ground and offer stability.  Great!

I continued my research and came across this article that suggests PT alone is not enough.  It suggests various support garments to help the core.
www.karenpapemd.com/index.php/core-support-options
I often feel that going to PT once a week is not enough but am always left with the question of What to Do?  My daughter won't  brush her teeth without an argument so honestly I don't have the energy to make her do sit ups everyday!  I often wondered if there was something to "remind" her to hold in her stomach muscles.  Turns out there is...  And your insurance might even pay for it!
Check out the article it is interesting and informative.  I am going to do some more research before I actually purchase one of these but thought it would be helpful to share.

Are kids with Hypotonia more Emotional?

My daughter is emotional.  And when I say emotional I just mean emotional.  She does not have an emotional behavior disorder she just has heightened emotions.  They are good and they are bad.  She is a very loving kid.  She gives hugs and says sweet things all of the time.  She cries, sometimes with purpose and sometimes even she doesn't know why.  And we can't forget about the anger!  When she runs cold it is Mt. Everest!  She is an only child so I don't have anything to compare her too but often wonder if this has anything to do with the Hypotonia.
Last year I met a mother of 4 and her daughter had Hypotonia.  She made a comment to me about how emotional her daughter was and it got me thinking.  This mother of 4 obviously has 3 other children to compare her too and she is the only one who is this emotional so perhaps it has something to do with Hypotonia?  I don't know.
Are kids with Hypotonia more Emotional?  Is this just par for the course?  It doesn't make any sense that they would be related but curious.
I would love to hear from other parents.

Hypotonia Treatment Woes

I have blogged in the past about getting help for kids with Hypotonia.  Dealing with the school districts, etc.  Well, I have always felt fortunate that we have insurance that covers my daughter's physical therapy and I don't have to rely on the school district.  One thing I hadn't thought of, what if physical therapists stop taking insurance?

When I found out about my daughter's Hypotonia, the first thing I did was look for a PT.  I found a great one right away.  The practice only focused on Kids, the space was fun and the therapist was fantastic.  We had to drive a half hour to get there but it was well worth it.  After about a year she informed me she was closing her practice.  She was still doing home visits but she was not licenced in our State so she could no longer treat my daughter.  She felt very bad about the situation.  I on the other hand didn't see the big deal.  I was disappointed of course but understood the decision and thought we will just find someone else.  No problem.  Well, it turns out it was a big problem!  She recommended a place that treats children but I could not get a time slot after school and the only option was to take her out of school once a week (this place was a 20 min drive).  I looked further and found only 1 other PT that treats kids in our area!  I couldn't believe it!  Everyone tells me that Hypotonia is a somewhat common problem.  I find it curious why so few PT's treat kids.

So we are seeing the new PT.  My daughter loves her and is responding to the exercises.  Great!  The other day she informed that they are considering no longer taking insurance.  Apparently, they don't take it for OT and Speech.  She said dealing with the insurance companies is getting too time consuming.  I haven't heard any more about it but wonder how much more this will cost.  Will getting private PT become too cost prohibitive?  The schools are also maxed out on budget so even if they cover her PT will it be enough?

When I went to the school district they told me the issue was medical and my insurance will cover her treatment.  What if insurance doesn't cover the treatment?  Then what?  I am going back to the school to have my daughter re-evaluated and for now insurance is covering her treatment...  The situation just got me thinking that probable in the not so soon future that won't be the case.

What options will there be to treat these kids?  It seems that current government legislation is promising to improve our children's future but I only see it getting worse.  I don't know anyone that is benefiting from the current insurance changes and the Core learning policies seem to eat up already shrinking budgets in our schools.  This means less support for the kids that are on the edge.  The only way to get help is to be on the bottom or the top.  What about the kids in the middle?  Don't they deserve our help and support.  They are now the most at risk because they are becoming the forgotten.

I will keep fighting for my daughter because I can and I have too.  I worry about a day that, it is not enough and think about the kids that don't have anyone to fight for them.

Gluten Free Diet - Part II

I put my daughter on a Gluten Free diet and am I am sorry to say it did not eliminate her symptoms of Hypotonia.  I didn't think it would since I know the reason for her Hypotonia but I was hopeful.  One thing I did notice was an increase in her energy level.  She seemed to have more energy and her mood was great!  I don't think the lack of Gluten was the reason since I saw nothing else change.  I do think it did have something to do with what she was eating.

I reached out to one of my friends who is a nutritionist.  I thought perhaps it had something to do with how her body processed wheat.  Not necessarily that she was intolerant or allergic but perhaps she converted it to energy or sugar too quickly and left her depleted of energy.  My friend suggested something else.

She suggested that perhaps she was sensitive to the pesticides in the wheat she was eating.  She asked if I fed her exclusively organic.  I do not.  I do the best I can but don't buy everything under the sun organic and I certainly don't buy organic flour.  I looked at the Gluten Free products I was feeding her and did notice that most of them were organic.  I also do buy a lot of organic snacks.  I also buy organic corn products because corn is the number one GMO crop.  So why don't I buy organic flour or other wheat products?  I cannot answer that but I am going to start buying more organic products.  Especially wheat.

Even if the switch does not increase her energy I will feel better about what I am feeding her.  After all her spikes and dips in energy may have nothing to do with what she is eating but just a symptom of Hypotonia and her Chromosomal disorder.  I can control what she eats so I tend to focus on it.  After all eating well, can't hurt!

The Hypotonia Pace

Most people don't know my daughter has Hypotonia and I believe the reason is my husband and I live our lives at her Pace.  She is an only child and I don't work so we have the luxury of not wearing her out.  If she had siblings or had to go to daycare I have no doubt her symptoms would be evident to everyone around her.

I have to admit I struggle with living our lives at her Pace.  Most people are going from activity to activity, and seem to do so much more with their day that somehow I feel that we don't do enough.  I start to push my daughter to do more and inevitable she gets worn out, cranky and sometimes even sick.  I then pull back.

I asked my daughter's Geneticist if I should follow her cues for not wanting to do something or should I push her (I ask everyone this question but she is the only one that has given me a concrete answer)?  She said "You should follow her cues.  Where is it written that you have to constantly be doing something?  Why isn't it ok to just stay home and relax?"  I liked that answer because it was actually an answer and because I think she is right.  When I was a kid we weren't shuttled around from activity to activity.  My brother and I both had one extracurricular activity at a time and the rest of the time we were home or playing at a friends house.  In the summer we went to the pool every day and then to the beach for 2 weeks, not to camp or Disney.

I think as a society we are pushing ourselves and our kids too much.  It seems we have to, to keep up with everyone else.  Look at Kindergarten...  There is a push to have all day Kindergarten so the teachers can adequately teach the material to prepare for first grade.  A half day program was too rushed and the kids had no downtime.  Well, our school district went to all day Kindergarten and they still don't have down time or much play and are bringing home homework!  I often wonder if they were to give the kids more play time they might actually be able to pay attention more and the teachers would be able to teach.

I am learning to embrace the Hypotonia Pace and ignore what everyone is doing on Facebook!  I think as a family we are happier and healthier because of it!

Building Self Esteem in Kids with Hypotonia

My husband went to a seminar about substance abuse last week.  He suspects his sister has a terrible problem and went for information about how to help her.  He listened to several stories from families affected by substance abuse.  Some with positive outcomes and some with very bad outcomes.  One common element was the reason the kids turned to drugs or alcohol.  It was always to feel better about themselves.  This immediately got him thinking about our daughter.

We often wonder if she is becoming aware that she can't keep up with other kids.  We have held her back from school for a year so this has helped but it is a constant concern.  My daughter has a chromosomal disorder that is associated with intellectual disability.  So far we have been told that she may just have a learning disability but it is still too soon to tell.  She may never be fully aware that she can't keep up with other kids but if she does become aware how do we help her deal with it?

It seems that most kids if not all kids have some sort of crutch or what others might deem an imperfection at some point in time.  They might wear glasses, have braces, allergies, asthma, pimples, let's face it I could go on....  Why do some kids deal with these issues without a problem while others feel left out, angry or hurt about their issue?  I used to think it was in their genetic makeup but after doing some research I realize I am wrong.

Self Esteem seems to be the driving force on how we perceive ourselves which ultimately affects how others view us.  This wasn't exactly mind blowing information but the fact that we are not born with Self Esteem but actually acquire it, was....  I just thought people were born with confidence and others were not.  Just like some people are born shy and some outgoing.  Turns out shyness and self esteem have nothing to do with each other.  You can be shy but have a tremendous amount of self worth!

So how do I make sure my daughter has a lot of Self Esteem?  Well, several people have written about the subject.  Just google kids and Self Esteem and tons of articles materialize.  Most often the articles are even directed at Parents with Special Needs Kids.  It is worth reading the different articles because they are all loaded with great information but they all seemed to have the same elements.

1) Make sure you (as a parent) have a good sense of Self Worth.  This is number one which really makes sense.  How can you teach your child to love and accept themselves if you don't love and accept yourself.  Dr. Sear's page has a great paragraph on this and even a technique to help break the pattern of generational mistakes.  If you feel your lack of confidence comes from the way you were parented this is a great technique to break the pattern.

"List the specific things your parents did to build your self-image.
 List the specific things your parents did to weaken your self-image.
Now resolve to emulate the good things your parents did and avoid the rest. If you find it difficult to follow through with this exercise on your own, get help from a professional. Both you and your child will benefit.

Don’t be too hard on your parents

They probably did the best they could given their circumstances and the prevailing advice of the times. I remember once hearing a grandmother say to a mother, “I was a good mother to you. I followed exactly the schedule the doctor gave me.” This new mother felt that some of her present problems stemmed from the rigid scheduling that she endured when she was a baby. She was determined to learn to read her baby’s cues. I reminded her not to blame her own mother because the prevailing parenting practice at the time was to follow the “experts’” advice on childrearing. The mother of the 90′s, however, is more comfortable becoming the expert on her own child."

2) Play with your Child!  I am a stay at home mom so I felt like my daughter gets a lot of attention.  Well, I started to realize she doesn't necessarily get the positive attention she needs from me.  The attention she gets most of the time is me telling her to get dressed, wash your hands, pick up your room.  I am also always cooking, cleaning, doing laundry, email, etc.  I never thought about how she might perceive that I think these things are more important than her.  They are important but most days I can take an hour or two to play with her.  So now I take time to Play.  We might only Play for an hour but the impact has been astounding.  She is so much more cooperative and I find that she isn't always wanting my husband to get home from work.  He Plays with her.

3) Practice Attachment Parenting.  If you didn't do this when your child was a baby it is not too late but can get a little more challenging.  When my daughter was a baby my mother used to tell me "she is manipulating you" every time she cried.  I never bought into that and even if she was I was ok with getting undertaken by a baby who just wanted to be loved and comforted.  Now that she is older I do believe she mastered the art of manipulation so I have to be more careful.  I still want to nurture her but don't want to create a Monster!  I do think that if you practice the other tips for building Self Esteem your child will feel loved and secure and that is what attachment parenting is all about.

4) Give Your Child Responsibilities.  This one is easier said than done.  Some times it is so much easier to just do something than ask your child to do it.  But it is definitely a confidence builder.  My daughter is going to a Catholic Pre-School this year.  They give every student a job and they rotate the job every week.  Some jobs are harder than others but they put an equal amount of importance on all of them.  Every week she looks forward to finding out what her job will be.  One week she was prayer leader and actually practiced at home!  She takes the jobs very seriously and it has been such a confidence booster.  I am not sure why I don't practice this on a regular basis at home.  The nights when I ask my daughter to put the plates on the table and or the glasses of milk she just beems!  That is worth the aggravation of trying to get all of the milk out of the carpet if it spills.

5) Help Your Child Learn How to Handle Themselves in the World.  I think too often we as parents follow the sink or swim rule.  Just throw your child out there and they will figure it out.  The idea that we can teach them how to choose their friends or how to handle themselves in compromising situations seems kind of foreign to me.  When it comes to social situations I used to think my daughter will just figure it out.  We as parents need to help guide our children to have healthy happy relationships.  After all when they go to school not only do they have to manage their peers; the bus driver, teacher, aids, cafeteria staff and I am sure a ton more people than I even realize.  While our children are young we can influence their friendships and encourage positive friendships vs. destructive ones.  This will teach them to choose friends that build them up not bring them down.  I have already made this mistake.  When we moved to the area we didn't know a lot of people and clung to a mother and daughter that we were always running into.  Seemed to make sense that we would be friends.  I started to notice that the daughter wasn't always being nice to my daughter and was sometimes just mean.  At first I felt like I had to teach my daughter how to handle herself when this girl was not being nice.  Then it occurred to me that by encouraging this friendship I am teaching my daughter it is ok to be friends with people who do not treat you well.  I have since stopped encouraging this friendship and started seeking out  more positive friendships for her.

There are tons more tips on building Self Esteem in your child but I felt like these were the most pertinent.  I also think another important note is, it is never too late to work on Self Esteem!  Either your own or your child's.

My Obsession with Risotto!

I have to admit my timing for going Gluten Free was poor to say the least!  The North East and many other parts of the country have been dealing with ridiculously cold weather.  Some days I hope my daughter doesn't have school because I don't want to leave the house to have my face torn off by a gust of 0 degree wind.  The only thing I want is to dip a nice piece of soft squishy bread into my big heaping bowl of hot soup!  Although there are lots of Gluten Free options out there and some better than others there is just no replacement for a Fantastic piece of Glutenous BREAD!

While looking for a lentil dish for New Years (I am very superstitious) I came across this Risotto with Leeks, Swiss Chard and Lentil recipe from Martha Stewart.  It was admittedly a pain in the rump to make but sooooo good.  Even my daughter gobbled it up.
http://www.marthastewart.com/355364/french-lentil-and-swiss-chard-risotto

Since going GF I had remembered how rich, creamy and completely satisfying the New Year's Risotto was and have since been obsessed.  I have been obsessed with altering ingredients and finding techniques to make it less time consuming.  I have even found that just plan old risotto is good too! And although I can't find a way to keep from stirring the rice constantly (to get that creamy texture that mesmerized me in the first place) I have found how simply relaxing it can be.....It is a little piece of "me time".  I am not able to do anything but stir the rice and everyone just has to deal with that!

So this is my latest concoction which is not totally originally but hopefully an easy, healthy, satisfying meal the whole family will enjoy.  And yes, Risotto can be a meal.  Add a bean to Aborio Rice and it is a complete protein!  My latest Risotto is made with Quinoa which seems to be the new Super GRAIN!  It is not always popular with my family but this recipe won them over.

Quinoa, Leek and Mushroom Risotto

It is as simple as it sounds.....Ingredients
1 Cup Quinoa
1- 2 Cups of sliced mushrooms (any variety)
2 Medium Leeks
5 Cups of Chicken Stock
1/2 Cup Grated Parmesan Cheese
Olive Oil
Salt to taste

1) Cut ends and stalks of Leeks.  Slice in half lengthwise and slice.
2) Place cut leeks into a bowl of water for about 10 mins.  Pick them out of the water and drain. (this is to remove some of the dirt)
3) Heat Chicken Stock and keep warm
3) Coat the bottom of a sauce pan with Olive Oil and Saute Leeks for 2 mins.
4) Add the sliced mushrooms to the leeks and cook for another 5-10 mins (time depends on size of mushrooms)

* TIP  if your kids are not fans of mushrooms you can chop them pretty fine to hide the texture and speed cooking




5) Add Quinoa and saute for 3 mins.
6) Gradually add the hot chicken stock (1/2 cup at a time) and stir until the liquid from each batch is absorbed.  Continue until you have used all of the chicken stock and the texture of the quinoa is creamy.  Total time about 30 - 40 mins...
7) Add grated parm cheese and salt to tate.
Serve.

I love this dish because my family will actually eat the Quinoa which is so good for you.  It is a protein rich food, loaded with Iron, Fiber and B2 which all kids with Hypotonia need.  I also love it because it is so comforting in the cold winter months.

Enjoy!

Veggie Quesadillas

I want my daughter to like eating veggies so I try lots of different variations and incorporate a veggie into every meal as well as a snack.  As much as I hate to admit it, it isn't working.  I can't say I blame her.  It seems like I grew up in Hidden Valley where everyone loved vegetables.  At the holidays a special treat was turnips and in the summer I think we ate asparagus with every meal.  I can remember sitting at the dinner table as a child literally gaging on Asparagus.  So forcing my daughter to eat all of her veggies doesn't seem right to me.  The rule is you have to eat one veggie and you get lots of praise for eating all of them!

Even though she isn't willing eat a ton of veggies she still needs their nutrients.  Especially with hypotonia.  So I do what a lot of parents do and find ways to sneak them into a meal.  My daughter like me loves sweet vs. savory so I exploit this fact when including veggies.  Thus the Veggie Quesadilla!  This is one of my favorites because it is so easy!  I often make them on nights when we get home late from activities.

Ingredients:
Corn or Flour Tortillas (I have been using corn lately and my daughter seems to prefer them over flour b/c they are sweeter.  They are also less carbs and the ones we use are gluten free)

Shredded Mild Cheddar, Monterey Jack or a combo of the two

Sweet Potatoes

Cauliflower

Shredded Chicken

1) Slice 2 cleaned sweet potatoes in half (with skin) and place cut side down on a cookie sheet coated with olive oil.  I put a piece of tin foil down for easy clean up. Place in a pre-heated 400 degree oven for about 40 mins. (maybe more, maybe less depending on the size of your potatoes)  Place high in the oven so the cut side doesn't brown.

2) Place 2 boneless chicken breasts in a skillet with water and a pinch of salt.  Cover and simmer over low heat until chicken reaches internal temperature of 170 degrees.  Once done cooking slice or tear into shreds.

3) Cut up half a cauliflower head and place in pan with small amount of water and salt.  Cover and steam until tender.

4) Mash the steamed cauliflower and mix in the shredded chicken and cheese.

5) When the sweet potatoes are done (soft to the touch) remove them from the oven and let them sit to cool off.  If you don't have time for that you can handle them with a towel. Scoop the inside of the potato and spread onto two cold tortillas.

6) Spread chicken mixture on one tortilla and cover with the second.

7) Microwave for 30 - 40 seconds (until cheese is melted)

8) Slice and serve.

If you prefer a crispier tortilla you can heat on the griddle.  I serve this with mashed avocado (my daughter does not like spicy) and sour cream.  

Very quick satisfying meal that gets gobbled up.  If you don't have time you can skip the sweet potatoes.  They are just a yummy combination with the cheese.

Enjoy!

Gluten Free Diet. Does it Help Hypotonia?

It seems "Gluten Free" is more popular than ever.  In addition to Celiac disease and gluten intolerance parents put their kids on Gluten free diets for a host of issues, ADHD, Autism and just general behavioral issues.  There seems to be no clear data that indicates gluten is responsible for these issues but if you are left with few options to help your child why not.

I have often questioned a wheat/gluten intolerance for my daughter.  She has always had a very large belly and I have asked several doctors about a possible wheat/gluten intolerance.   My husband has an aunt that has a wheat intolerance and I have an egg intolerance so I didn't see it was out of the realm of possibility.  I was always given a resounding NO.  Kids with a gluten intolerance are emaciated, not over weight.  I let it go since I was feeling completely crazy but it always stuck in the back of my mind.  That is until I read a blog post from a mother who has her children on a gluten free diet.  Her daughter has Hypotonia and she changed to a gluten free diet because her son was sick.  Turns out the gluten free diet also helped her daughter.

When I read the post it was as though she was talking about my daughter.  Similar symptoms, physical features, etc.  Since I had always wondered about gluten/wheat this was the tipping point for me.  I started doing more research about gluten intolerance and was stunned what I found out.  70% of kids with an intolerance are obese.  I also found out that there 5 different types of gluten intolerance, celiac disease is just one.
1) Celiac
2) Non- celiac gluten sensitivity
3) Germatitis herpetiformis
4) Gluten ataxia
5) Wheat allergy - a true allergy

It seems that Gluten ataxia can cause neurological issues like Hypotonia.  So I decided I was going Gluten Free right then and there.  With all of the Gluten Free options at the grocery store how hard can it be?  And it wasn't hard.  We don't eat a ton of pasta or bread so it was pretty easy to make the switch short term.

I do offer a word of caution though.....even making a short term switch be careful your child is getting enough fiber.  Gluten is in Wheat, Barley and Rye so eliminating gluten means eliminating some vital nutrients including fiber.  Short term it shouldn't be an issue but the lack of fiber in our diet was evident within a couple of days.  There are plenty of Gluten Free products that use Flax Meal and Quinoa to offer the fiber, just make sure you look for them.  I also added beans to our diet to help fill the void.  If I decide to adopt this diet into our lives I will have to do my home work to make sure our diet is complete.

So far we have been Gluten Free for 3 weeks and I am not sure it is having an impact.  I guess I have been looking for a big change but I am not getting one.  One thing I have noticed is her mood.  She cooperates, is more independent and doesn't yell and scream.  I am just not sure this is Gluten or just a coincidence.  I also noticed she seems to have more energy but she was coming off an antibiotic when I started the diet and she always seems to have more energy after being on an antibiotic.  Her sleep has not changed.

I have decided to go Gluten Free for one more week and then go back to our old diet.  I want to see if I see a difference.  As far as I am concerned even if the difference is a little more energy and better mood sign me up.  It seems a small price to pay.  Either way when you don't have any answers looking into an intolerance is worth while.  Since it isn't an allergy there is no real way to "test" a food.  I have an egg intolerance and although my body is not allergic (meaning it doesn't produce histamine when I consume egg) the symptoms I experience are enough to steer me clear of any and all egg!

Once again, I don't have any answers just some food for thought.  No pun intended!

Can My Daughter "Handle" Mommy Going Back to Work?

I never intended to be a Stay at Home Mom.  I had planned on getting a Nanny or sending my children to daycare.  I had a good job and financially it made no sense to quite.  Well, someone else had another plan.

A week after I announced I was pregnant my manager informed me that my position had been eliminated.  I would work on a special project until I went on maternity leave and when I came back I would be laid off with a severance package.  I was angry, my husband was elated.  I traveled a lot for work and he didn't think I would want to travel after I had the baby.

As much as I hate to admit it. he was right.  Medically speaking my daughter has given us a run for our money since she was conceived.  Just around 3 months I was put on modified bed rest and eventually delivered 6 weeks early after my water broke at 32 weeks.  She had a lot of issues that no one could explain and I was constantly worried about her.  My company kept me on part time for 6 months after I came back from maternity leave and I hired someone to look after my daughter.  The problem was I couldn't leave her alone with her.  I was afraid she would have trouble breathing or some other issue and she wouldn't know how to handle it.

Shortly after I lost my job, my husband lost his.  It seemed to make sense that I would go back to work and he could stay home.  I wasn't ready for that either.

Now my daughter is 5 and will be entering Kindergarten next year.  I feel like if I don't go back to work now, anything that is relevant in my career will be totally obsolete.  I haven't worked in 3 + years and already things have changed.  People pay less and want more.  Social media is king and I am competing with thousands of people who are out of work.  A Stay at Home Mom who hasn't worked in 3 years (well, ok 4) really doesn't stack up to the recent college grad or the recently laid offer person with more recent experience.

But can my daughter handle me going back to work?  I don't know.  I know she couldn't have handled it up until now.  Well, correction.  She couldn't have handled daycare.  I would have had to have a babysitter come to the house.  That is what I will have to do again.

I know I am not alone in this dilemma.  Every parent struggles with the balance of working and family.  I feel like my scale is starting to tip in the favor of working.  After all kids only get more expensive as they get older and is she better off getting the extra things she will need to succeed in life vs. a parent that is around to give her an after school snack?

Maybe I should be asking the question?  "Am I ready to go back to work?".  Am I ready to accept the exhaustion that comes with going to bed late, getting up early, and having to be "ON" all day?  Racing home from a busy day to rush and make dinner, do laundry and clean the house?  Spend quality time with my daughter after 6 when she is beat?  Run errands on the weekend?  NO I AM NOT!  But I don't think anyone really is......

It is safe to say it will be an adjustment but one most families go through and survive.

Hypotonia Help at School

Once your child ages out of Early Intervention there are several factors that will determine how much help they will get from local services.  The underlying cause of your child's Hypotonia, the severity, your school district and of course the teachers and administrators.  Your child's disability is looked at very differently and just because they qualified for EI services does not mean they will qualify for Special Education services.

I happen to live in a district that is known for a very stringent Special Ed department.  Despite the fact that my daughter had been receiving EI services most of her life she did not qualify for Pre-School Special Education services.

When evaluated, my daughter completed the tasks "good enough" to score a rating that would deny her services.  She was evaluated at home and on a day that she didn't attend school.  Even though by their "standards" she could handle a normal school day I knew she could not.  I knew that when faced with the daily task of attending school all day she would completely fall apart.  

Legally I could fight this decision but I wasn't really sure what I was fighting for......  A 503 plan?  Ok, what do I ask for?  A shortened school day, help sitting at a desk, walking to the lunch room, with gym, on the playground, writing????  She had never been in a Kindergarten environment before so I had no idea what Kindergartners do none the less what my daughter was capable of!

My other option was to send her to school and let her fall apart and then go through the Special Education process again.  Kindergarten is your first real exposure to formal education.  I feel it is the foundation on the building of formal education.  I didn't want this to be a bad experience for her.  I struggled in school and I wasn't going to let this happen to my daughter.

Fortunately I had reached out to a local agency that helps with the Special Education process.  I am not sure every area has this resource but I highly recommend finding out if you do.  Finding them can be a bit of a challenge so look deep.  I made a lot of phone calls and finally found the right combination of search words on the Internet to uncover an agency that was able to help.

Once I found help I was given advice on questions to ask and they made me aware of all of my options.  Based on their advice I decided to set up a meeting with the Principal and request a meeting with her, myself and my daughter's kindergarten teacher.  The meeting was to discuss my daughter's disability and ways to help her get through the school day.  The meeting never happened because the principal was not open to working outside the Special Education process.  Her solution was let my daughter go through Kindergarten screening (during the first week of school) and if she still didn't qualify for help I could pull her out.  I was not happy with that solution and decided to hold her back a year.

I am now going through this process again and am much better prepared.  I cannot hold her back again so I have to fight harder to get her help at school.  I  plan on arming myself with an advocate this time!  I also came across a great article about help at school for kids with Hypotonia.  I found this helpful to look at different areas at school my daughter might struggle.  It also talks about how fatigue impacts kids with hypotonia.  Which is such a huge factor and very often forgotten.

http://handskillsforchildren.com/ot-bits-bytes-hypotonia-strategies-for-success-at-home-and-school/

For those of you going through similar issues good luck!

A Parent's Best Resource is Other Parents!

One thing I have learned in life is I don't know what I don't know until I know it!  I never in a million years would have thought my daughter had Hypotonia because I never even heard of it.  I don't have any experience in the medical field or with kids so there are a lot of things I don't know.  You can't research something if you don't know it exists.
 
I have found as a parent my best resource is other parents.  I used to be a pretty private person.  I always let other people do the talking and didn't share much about myself.  Since having my daughter that has changed.  I talk to everyone about everything.  I am always amazed how much I learn.

At my daughter's swimming lesson I met a mother whose daughter also has Hypotonia.  She told me about her plight with her school district.  They denied her daughter services and she got an advocate for her daughter.  Again, didn't know they existed.  The school district certainly does not tell you they do.  So I was able to look into getting an advocate for my daughter.

At the park I met a mother whose daughter is in Special Education in my school district.  She also has an advocate for her daughter.  She gave me lots of pointers for dealing with the school.

I go could on but the point is I used to think telling the world my problems was a sign of weakness.  I now know that everyone has problems and most people are happy to help with kind words and information.  So I say tell the world your problems, you never know who is going to be able to help.

Support for a Child with Hypotonia.

My daughter's disability is mild.  When people first meet her they don't know anything is wrong.  She is very cute and bowls you over with her incredible smile.  Then they spend more time with her and they start to see something is wrong but are not really sure what it is.  I have often told parents that she has a Muscle Disorder and I get a kind of "oh, so that is it" reaction.  I am fine with that.  Hypotonia can be mild to severe and can come with a host of other issues.  I am glad my daughter doesn't necessarily wear her disability on her sleeve.  But it doesn't make me worry about her any less.  

Last year my daughter's pre-school teacher suggested that I have her evaluated by the school district for Physical Therapy.  I had her evaluated.  She scored very high on the Psychological piece and marginal to low on the Physical Therapy piece.  The PT said that she had flat feet and it was causing all of the other issues.  Order these orthotics and in a month you will start to see some improvement.  Let's just say that was WRONG.

Long story short she did not qualify for Special Education services within the school district.  Despite the fact that the PT did not evaluate her in a classroom setting and was totally wrong with her assessment they said her Physical Limitations did not impact her ability to learn.  My daughter can not stay seated in a chair for 5 mins and IT DOES NOT IMPACT HER ABILITY TO LEARN?  Come on!

I ultimately made the decision to enroll her in another year of Pre-School.  I felt she wouldn't get the support she needed to survive Kindergarten.  I want her to like going to school and overall be happy.  This won't happen unless she gets extra support at school.  I realize that budgets are tight and there are lots of kids with much worse disabilities than my daughter.  But at the same time my daughter is the type of kid that is destined to slip through the cracks her whole life and I don't want that to happen.

So we are at that time of year again and I have to make the decision about Kindergarten.  I cannot hold her back another year so I have three options.
1) Send her to public school - free
2) Send her to the private school (small class size) where she goes to pre-k - $6,000 (that is on top of the $4k we just paid for an third year of pre-school)
3) Home school - not really an option b/c I would lose my mind

I am currently in the process of having her evaluated by the school district again.  We have gone through a lot agony, time and money getting a diagnosis for her.  I have been told this will help her get special education services.  We will see.  I am still faced with what is in the best interest of my child.  I am grateful that we are able to afford private PT and enroll her in private school.  For some that isn't even an option.  At the same time we make a lot of sacrifices to do this and I wonder how long we can keep it up.  It also makes me wonder how many kids out there are slipping through the cracks.  For them there is no support.  Very sad.

Parents must Advocate for Adequate Health Care

If it wasn't for some fantastic specialists I would have completely lost faith in our ever improving Heath Care System.  I no longer feel taking my daughter to her pediatrician is helpful.  Even her yearly checkup is a bit useless.  They check her vitals, ears, throat, heart but that is about it.  They do ask if I have concerns and when I bring them up they get brushed off as no big deal.  My daughter's pediatrician never suggested she had Hypotonia it was one of her TEACHERS.....

I have to say I thought my daughter's 5 year checkup would be different.  After all she has now been properly diagnosed with Hypotonia. We have had countless tests, and seen several specialists.  Well, I was wrong.  Her pediatrician didn't take the time to look at her chart before her visit and when talking about the fact she had Hypotonia she just said "at least it is not a Muscular Dystrophy".  That is the best you can come up with!  I didn't come there for a pity party but thought I might actually get some MEDICAL advice as to the best way to help my daughter!

I like her pediatrician but I don't like the level of care she is receiving.  So I have been looking for a new pediatrician.  Unfortunately it seems I am not alone.  Every time I meet someone new with kids I ask "so who is your pediatrician?"  "Do you like them?".  I have yet to get a resounding "YES".  Typically I get a yes with hesitation.  When I explain why I am looking for a new pediatrician they usually confer with similar experiences.

I no longer totally blame the pediatricians.  Have you looked at your explanation of benefits from your insurance?  They get paid nothing for these visits.  They have no choice but to limit the time spent with your child.  In 5 years my daughter has had 5 pediatricians.  Out of the 5 I have been happy with 1.  I was so happy with the 1 I was willing to drive 45 mins to her office.  But things changed and she stopped seeing as many patients.

So what is the solution?  Settle for inadequate care?  I don't know.  Maybe?  I do know that we as parents have to be extreme advocates for our children.  No longer can we put our faith and trust in the medical profession.  The reality is no one knows your child better than you.  Even the best pediatrician in the world will never see every aspect of your child.  You can only hope to find one that will listen when you tell them.

I will continue to look for a new pediatrician because mine doesn't listen.  I will also continue to do research on the Internet, talk to other parents and most importantly trust my gut.  I, like other parent's know my child and I know when something is wrong.  I just don't always know what it is so I will keep searching the Internet!

Improving Nutrition One Treat at a Time?

I know lots of kids that are picky eaters.  I am always amazed at how they still look so healthy and are able to function.  My daughter overall is not a picky eater but if she eats to many sweets and/or not enough protein it is obvious.  She has no energy and acts like a demon has taken over her body.  Let's just say I am very careful with her diet because of this.  On occasion I like to pretend she does not have this issue and let her eat whatever she wants (mainly sweets and junk food).  Every single time I regret it.

Eating protein is not an issue, grains are ok but Veggies, not a chance.  Leafy Greens might as well be worms crawling on her plate.  Actually I think she would rather eat the worms than spinach and the likes.   Nutrients in Leafy Greens are important to every one's health but they especially benefit kids with Hypotonia.  They are loaded with Vitamins that help with energy production.  They don't really create energy but help with more efficient energy production and utilization.  I have to say I notice a visible difference in my daughter when she is eating leafy greens vs. not.

So how do we get them to eat leafy greens!  There are lots of cookbooks with recipes for hiding veggies.  I use some of these but am not 100% convinced that a vegetable that has been cooked twice still holds a lot of the nutrients you are trying to get into you kids.  Don't get me wrong some is better than none but I wanted to find a way to get more....

So I decided to trick my daughter with a treat.  I put Spinach or Kale into a Smoothie.  The secret - Blueberries.  The skin from the blueberries has a similar texture to the greens and she doesn't notice them.  The color from the blueberries also masks the green color in the smoothie.  I get a lot of greens into her this way, plus they are raw and provide the most nutrition!

Recipe:
Berries - fresh or frozen but must include blueberries
Bananas - also can be fresh or frozen (I often freeze brown bananas, they are super sweet and always on hand)
Greek Yogurt - I prefer plain but flavored is always a bonus
Kale or Spinach - Just wash and shove in the blender
Ice - optional, if fruit is frozen not necessary
Honey - optional, if fruit or yogurt is sweet not necessary

Place ingredients into a blender (I actually use my Cuisinart because I keep breaking my blenders with the frozen bananas). Blend until smooth.  For best results pour into a covered cup so they can't see what is in there.....

I also take this one step further and make fruit pops.  I love my Zocu for this.  It makes pops in less than 10 mins.  So when my daughter is sick and doesn't want to eat I can easily blend up some fruit and veggies and serve it a fruit pop!!  Yay.

The Care and Feeding of a Child with Hypotonia

No matter how hard I have tried I can't make this "Hypotonia" go away.  Up until a year ago I was told nothing was wrong and now no one can tell me how to "Fix" my daughter.  She has been to two allergists and an ENT thinking maybe it is an allergy or her adenoid.  No.  I have actually even thought perhaps WE ARE CODDLING HER and tried to push her, that didn't work either.

After a year of specialists and tests I have finally accepted this condition is not going away.  Yet still, no one can tell me definitively how to help my daughter.  I kept waiting for the pamphlet titled "Hypotonia a Parent's Guide".  I never got one.  (If it is out there please let me know where I can pick it up!)  It would tell me what pain she might be experiencing, how often to exercise, special food to help her feel good, she will tire easily, have emotional outbursts and seizures, etc..

Since there is no "PAMPHLET" I like every other parent "WING IT".  I take her to PT, Ballet and Swimming.  I try to find activities at home to help build her strength (maybe feeling guilty about not doing more at home is a bit more accurate).  I try and provide emotional support when she is upset about not keeping up with kids at school but still I am left feeling a bit helpless.    So when feeling helpless it seems I always look to food.  

We live in a very diet driven society.  There is a lot of advice about eating and I for one am a believer.  I think we are what we eat and your diet has a dramatic impact on how you feel physically and emotionally.  So I searched for diet help with Hypotonia.  Not surprisingly I didn't find a whole lot.  I did find the following article.  Please keep in mind I am NOT talking about Hypotonia that has a metabolic cause.

http://www.kellydorfman.com/images/Low_Muscle_Tone-website_1_.pdf

I thought this article offered good advice about Nutrients to help supply energy and build muscle.  I am not a huge fan of suppliments so I am looking for ways to get these nutrients into my daughter without them.  Not an easy task.  Let's face it kids are picky eaters, add weak jaw muscles and potintial sensory issues into the mix it seems almost impossible.  So suppliments may be the best option but for now I am going to try food.  If nothing else it makes me feel like I am at least trying to help her.

So What my 5 Year Old is in a Stroller!

I was the perfect parent before I had kids.  I judged all of my friends for their weak parenting skills.  I was an expert on Sleeping, Feeding and Discipline!  It all seemed so obviously easy until I had a child of my own.  The idea that this little person would have a mind of her own and completely ware me out to the point of complete and utter compliance seemed impossible.  Well, to all those parents that I have judged in the past let's just say Pay Back is a Bitch....and I have been paying!

I pay with the constant judgemental looks from others when they see my daughter's belly hang over her pants, riding in a stroller, and my favorite a 5 year old screaming at the top of her lungs (like a 2 year old) because I have pushed her past the point of no return.  I can just imagine what they are thinking because I, at some point would have thought the same thing.

I wish we could post a sign that says "STOP JUDGING ME MY DAUGHTER HAS HYPOTONIA!".  That wouldn't really help because no one even knows what it is and most people that even understand what it is don't understand the full impact on each child who has it.  Is it wrong to wish that outwardly my daughter looks like she had a disability?  Yes!  My goal for my daughter is to live a happy productive life and let's face it that's hard no matter how "normal" (I don't think there really is such a thing as "normal") your child may be.  Life is hard and everyone has a crutch to bare whether it is visible by others or hidden.

So I will take my punishment and hope my daughter doesn't bear the brunt of my judgemental thoughts.  I no longer judge any parent (I have moved onto single people that get to sleep through the night : ) ) because I now no that ever child comes with their own set of challenges and we are all doing the best we can.  I also know that how I handle raising a daughter with Hypotonia will impact how she handles herself.  So I will have a positive attitude and push her in the stroller with a big smile on my face!

My Daughter's Hypotonia is not My Fault.

Even before my daughter was diagnosed with Hypotonia I had been blamed for her inability to walk.  "You carry her to much, she is always in a stroller she needs to walk on her own, and my favorite she needs to play outside for at least 60 mins a day."  These comments were made by people who care and even doctors.  They were meant to be helpful but they were not. They left me feeling even more frustrated and bad about my parenting skills.  

I now know her disabilities are NOT MY FAULT (well, genetically they really are) I still look for affirmation of this all of the time.   I constantly ask Doctors, Her PT and anyone who is familiar with Hypotonia to remind me it is not my fault.

 I often struggle with the question am I doing enough to help her?  I don't know the answer to that.  

I often talk to her PT about things we can be doing at home to build her strength.  Do I do them?  NO!  My daughter fights me on everything and by the time I add the exercises to the list I am worn out.  Occasionally when I am feeling like a Super Mom I come up with creative ways to do the exercises but that is few and far between, maybe like twice in the last year.  

One thing I do know is that feeling this way isn't good for anyone.  Myself or my daughter.  She is now 5 and is starting to become aware that she can't keep up with other kids and is embarrassed about the size of her belly.  In addition to me helping her physically it is my job to help her emotionally.  She needs to be a confident kid who accepts her weaknesses and focuses on her strengths because she has many.  

This post is just a reminder to myself and others of this fact.  Everyone has a weakness and I think parents are wired to blame themselves (that is before your sweet child turns into a teenager and they start blaming us for everything, then we can finally defend ourselves!). Remember always.....

"Life is 10% what happens to you and 90% how you react to it." Charles R. Swindoll

My Daughter has Hypotonia! Now What?

Hearing the words "your daughter has hypotonia" came as a relief.  Since she was born I knew something was wrong but didn't know what.  I had brought up issues to countless doctors to only be labeled as a Nervous Mother.  This label was so strong even when I brought up breathing issues that were so severe we called 911 I was brushed off.  So getting a concrete diagnosis of Hypotonia was life changing for me.

For those unfamiliar with Hypotonia the following is the definition on Wikipedia.
"Hypotonia is a state of low muscle tone^[1] (the amount of tension or resistance to stretch in a muscle), often involving reduced muscle strength. Hypotonia is not a specific medical disorder, but a potential manifestation of many different diseases and disorders that affect motor nerve control by the brain or muscle strength. Recognizing hypotonia, even in early infancy, is usually relatively straightforward, but diagnosing the underlying cause can be difficult and often unsuccessful. The long-term effects of hypotonia on a child's development and later life depend primarily on the severity of the muscle weakness and the nature of the cause. Some disorders have a specific treatment but the principal treatment for most hypotonia of idiopathic or neurologic cause is physical therapy, occupational therapy for remediation, and/or music therapy."

As mentioned in the definition Hypotonia is not a disease rather the symptom of an underlying medical condition.  So you can imagine that my relief was quickly followed by horrification as to what was causing the Hypotonia.  We are among the fortunate to find a great Neurologist that actually conducted tests (I have heard a lot of people have had to push to get tests).  He found something in her DNA and we were sent to a geneticist.  It seems she is missing a strand on her X chromosome and this was inherited from me.  Apparently the condition is very rare and there are only a few reported cases (the main reason is the ability to see this deletion is new).  Despite the fact I don't have Hypotonia they say this condition is responsible for my daughter's Hypotonia.  Her Neurologist is not 100% convinced nor am I.  But after a year of doctor visits and tests we are giving it a rest.  We are visiting the cardiologist (double checking to make sure it is not affecting her heart, I love her Neurologist) on Friday and then we are done.  

My daughter was 4 when she was diagnosed (she is now 5).  She has developmental delay, low tone in her trunk, legs and shoulders.  She also suffers from mild seizures.  We are very fortunate that she can walk, run and climb stairs they all just take more effort.  Sitting in a chair is also an effort.  She cannot keep up with most kids half her age and can walk maybe 5 mins before getting completely winded.  These things are all par for the course I am finding out and like I said we are fortunate that she is able to do that much.  Her prognosis could have been much worse.  

I created this blog as a way for me learn more about Hypotonia and ways to help my daughter live a happy life from research and hopefully other parents going through the same thing.